This twenty-four-hour support thing.

Mr. Doherty is now writing about how “neurodiversity advocates” would never acknowledge the fact that some people need 24-hour assistance. Even though some have told him flat-out that they receive such assistance, this does not seem to register.

There are usually somewhere between 4 and 6 hours of a day when I do not get assistance, and I would easily qualify for 24-hour assistance if I wanted it. The reason I don’t want it is because having people around all that time is overloading and I rapidly end up far less functional. Which is something that I bet happens to a lot of autistic people who are receiving 24-hour assistance, but whose difficulties doing things are chalked up to being autistic rather than being overloaded by the 24-hour presence of a person in their life. (The overnight assistance I get is carried out through an electronic monitoring system, which significantly cuts down on that problem.)

I have advocated in several different states (including states I don’t live in) for improved services for autistic adults (including autistic adults who are quite unlike me). I have written up detailed information for the Autism Society of America on that topic despite not belonging to the Autism Society of America. I was part of a study carried out for the state of Delaware that interviewed successful adult service users and our staff to find out what worked and what didn’t, and I have presented to the Autism National Committee on a similar topic. I have done informal advocacy work in the offline world for other autistic people receiving services, including autistic people with little or no formal communication system (and also non-autistic people with developmental disabilities, since I’m not exactly going to say “You’re not autistic so I don’t care if you’re getting crappy services or not”). I have given talks to parents on how to assist their children in developing self-advocacy skills (regardless of communication method) and getting the best sort of assistance and avoiding the worst sort for their children, and I have assisted several agencies in training their support staff on both general human rights topics and understanding autistic people.

I have even been to a conference that had the theme of developing support systems for all varieties of people with developmental disabilities needing all levels of assistance, and doing the entire thing outside of institutions (sorry to disappoint the people who love the scare tactic of “People with a certain severity of disability must end up in institutions or die,” but it doesn’t work that way).

I don’t generally talk about all that at once, because it’s just something I do, as the need and situation arises. I don’t get paid. I don’t get (or want) much recognition, in fact in some cases due to the nature of the situations I have to do the entire thing without anyone but one or two people knowing I’m involved at all. I do this because I actually care what happens to other people. And I’m only talking about this right now because I think there’s an assumption that all I do in my life is sit around and blog.

And because I actually care what happens to other people, I don’t go around extrapolating only from my own life. This doesn’t stop people from assuming that I do, but actually I meet and talk with a wide variety of autistic people and also read about their lives as described by themselves or people around them. I also meet, read, and talk with a wide variety of other disabled people, as well as family members and staff. I use as much of this information as I possibly can when doing the sorts of things I do.

This, as well as my own life, is how I know various things about how the real world works out and can work out for autistic people, that often escape people who go on broad generalizations and stereotypes.

For instance, I hear a lot about autistic people who “need” 24-hour support in order to be protected from head-banging or other self-injury. That’s interesting. I didn’t have 24-hour support when I was doing a lot of that. I used to routinely hit myself in the head — with my hands or with objects — until I either blacked out, lost motor control, or became too confused to continue. I once calculated how much I did it and it was far more often than the standards I’ve seen for “severe self-injury”. I probably sustained more brain damage than I ought to have, and I know there was a risk to my life (a risk I’d just as soon not take), but I’m alive. I have seen people with far less severe self-injury than I had, described as “needing 24-hour support to survive” on the basis of their self-injury alone (heck, I have seen people sent to the Judge Rotenberg Center for far less than I’ve done). The results of lacking 24-hour support in that regard are mostly not pleasant, and there might have been a higher risk of death in that time, but I’m not dead. (And in the past year or so I’ve rarely self-injured in that manner, for anyone wondering.)

I also hear a lot about people who “need” 24-hour support because they might walk into traffic. I know a number of autistic people who do that and do not receive 24-hour support. Several of them have been hit by cars that way. Another one has been physically grabbed by bystanders and yanked out of traffic numerous times. While, again, this is not necessarily safe for them or drivers, they and drivers have all survived so far. (I should also point out, having seen several college towns, that non-autistic college students are often more dangerous pedestrians that way than autistic people, and few of them are on 24-hour support plans.)

And I hear about people who “wander off” (always seen as something we do in a quasi-dreamlike state or something, rather than as taking a walk) without proper clothing for the weather, etc. And I remember just three or four years ago ending up across town at three in the morning in shorts and a t-shirt, with nobody around, being barked at by an angry pack of wild dogs and having to wait that out before I could go home. I could tell you plenty of similar stories about other people I’ve known.

Some of us have trouble cooking, remembering to eat, or feeding ourselves. Many of us go hungry as a result. The human body can survive a long time while undernourished or outright starving. We survive, some of us missing meals, some of us missing days and weeks of food. The same way people who can’t afford enough food (a category many of us fall into as well) survive. And some die. But a lot survive.

I’m describing these situations for a reason. Certain kinds and levels of support may be the ideal. But when reality does not match up to that ideal, a lot of people presumed not to be able to survive, do survive. A lot don’t, too, and that is why people need access to whatever kind of assistance is necessary. But one thing I think when I hear about all these people who “need” 24-hour support based on such-and-such a trait, is the amount of people I know who have that trait or even more of that trait than those said to “need” such support, who’ve somehow managed to survive without it. Because they have survived without it, they’re presumed not to have the trait, and not to need the assistance as much as the people already getting the assistance. But the people already getting the assistance might survive too — not that the assistance should be taken away to find out, and not that people should be forced into barely subsisting, but there is not necessarily the fundamental difference of types of people here that some people want to paint it as. Those deemed worthy of assistance get it (sometimes inappropriately, though), and those not deemed worthy of assistance live various kinds of dangerous and unhealthy lives and go overlooked.

There’s also an incredible lack of imagination around possibilities for this assistance. I find it easier to imagine alternate ways of assisting people because I have seen them in action, or heard about them and how they work. I come from an extended family in which many people who would now be considered highly unusual and in need of tons of extra support, were not considered that unusual, and were considered just part of their communities. They got the assistance they needed, more or less, just like everyone else did. Not that there was no ableism, but things were handled a lot differently.

I see almost no understanding or knowledge of that situation in people who seem to declare that institutions are The Only Way to “manage” some people, as if that’s all there has ever been or could be. I also see almost no understanding of that situation in people who take their own culture so much for granted that they can’t see how other cultures could possibly enable and disable people differently than our own culture does. They assume that disabled people (in white middle-class North American anglo cultures) have always been classified, by everyone, in the exact same way, and always stick out like a sore thumb, and are always in need of “special” assistance rather than included in the amount of assistance everyone gives each other as a matter of course. I also see in this the ignorance with which people assume that poorer cultures automatically throw disabled people to the wolves at the earliest opportunity to “save resources” — because it’s assumed that disabled people take resources, give nothing back, and that every culture measures people on some scale of resources allotted. In reality, different cultures (and different parts of different cultures) respond to disability differently, including who they do and don’t view as disabled to begin with. Rather than acting like there’s only one culture on the planet, we could actually learn from this.

The assistance people receive takes many shapes. All people receive a good deal of assistance in their daily lives. Some of these people are totally aware that humans are an interdependent species and that they are beneficiaries of this, and others cling to the illusion that they are independent. Some people receive a kind and amount of assistance that is less common in their culture. If they are rich or royal, this might be expected. If they are receiving the exact same sort of assistance because they are disabled, it might be seen as special and burdensome.

But the way in which assistance is received varies too. There is nothing — at all — special about institutions, that makes them able to provide assistance that nobody else can. In fact, the quality of assistance in institutions tends to be lower than the quality of the same assistance outside of them. And much of what they do provide is not assistance at all, but a kind of anti-assistance that should not be given to anyone. To say there is categorically a kind of person who belongs in them, is false.

Some assistance is taken for granted as part of what communities do for each other — whether for pay or without pay. In my opinion, all assistance, paid or unpaid, needs to be moved into this category eventually, until people do not differentiate in terms of value between bathing someone who can’t bathe themselves and providing food to someone who can’t grow their own food. These should just be things human beings do for each other.

In the world as it is right now, different cultures draw lines in different places between what communities do for each other — and how doing that takes place — and what is “special” and “different” and “burdensome”. It’s time to start erasing those lines.

But in the meantime, there are many different ways of getting assistance to a person. They can live with a person (or more than one) who assists them with all of those “unusual” things. They can live next door to someone who assists them with those things. They can have someone come in and do those things. They can use adaptive equipment and environmental modifications to do those things. They can receive instructions from a distance in how to do those things, or have a computer programmed to walk them through doing those things. It can be a combination of all of these and other things, it just depends on the situation.

Disabled people can also provide assistance to each other. In my first year of living on my own, I only ate at all courtesy of an autistic person on the phone willing to walk me through each step of doing everything (from “move this part of your arm” on up). That was not an ideal situation but we did it because that was the best method of support available at the time. I now live down the hall from her, since we’re good friends now. And we still provide some assistance to each other.

Both of us, mind you, are officially classified as severely disabled and we can provide at least some assistance to each other. I do a lot of random physical tasks for her that she has trouble doing because she can’t walk, and I also am apparently better at putting her compression boots on her than her staff are. I am not good at organizing myself to do even basic things, but I can take directions if they’re given in exactly the right way. She provides a lot of support when I’m overloaded or shutting down, and for a lot of the confusion I get into with everyday living stuff. We stick by each other in crises even if we’re sick of each other. We don’t do this full-time (neither of us could, and neither of us wants to), but we do little things for each other all the time, because we’re friends, and most friends, disabled or not, do things for each other when they can.

My failure to support the same things Mr. Doherty supports stems not from my having not seen various real-life situations, but in fact from my possibly having seen more real-life situations, more ways of doing things, and more variation among people, than he has. And I try to look at all disabled people, not just autistic people, and all people, not just disabled people. And what I see — all the way around — is a far greater range of options than the way things are currently seen in a few very dominant cultures. And a need for people to recognize their total interdependence and act on that recognition before it’s too late — for all of us. When I look at that whole situation, I can’t see the standard approach to autism as effective, ethical, or even truly advantageous, for anyone. We need to be looking at more ways for human beings to support and assist other human beings (regardless of what category those human beings fall into) — not ways to eradicate certain categories of human beings.

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